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Please tell me what is wrong with my son (or me.....)

49 replies

smugtandemfeeder · 05/11/2010 06:33

Lets get the obvious out of the way first. Yes DS is two and a half, yes he has a new baby sister, yes I am tired, yes I play with him, yes I know all two year olds are difficult. No I dont have post natal depression. Sorry for being defensive, I know you are all lovely on here, its just the rest of the world who seem insistant on making me feel like this is normal/I am a bad mum and I know its not and im not.

DS has been a TERRIBLE sleeper since birth. He now wakes up at 10pm and we can settle him. But from 3 or 4am onwards he is awake for the day. That is the best we can manage and that is with DH sleeping in bed with him every night. No amount of consistent discipline or sleep methods have ever had any effect what so ever. He does not sleep during the day and really hasnt done since birth.

He has always taken everything to a completely different level than friends children of the same age. Physically he is slightly crazy, jumps off tables, climbs the walls. swings upside down on door handles. He is never still. Not even in his sleep.

He has terrible tantrums, mostly from frustration, or because he cannot sit still when I need him to. We have reached a stage where we cannot go out to the shops or any sort of restaurant as it is totally pointless. He just wants to run off and do what he wants to do - totally understandable for a 2.6 year olds but we just cant do anything. Things we expect to be fun and nice like going to the park or for a walk always seem to end up being a nightmare.

He is sociable so I cant imagine he has any straight forward autism. DH has just done one of those online autism tests on himself and comes up with a very high score so its made me realise that there might be some genetic thing going on.

He plays with the following - pretend hoovers, pretend chainsaws, pretend tea set, trains, anything with wheels. All of the above involve making a kind of hoover noise incessantly throughout the day. He repeats things over and over, little phrases he picks up off the tv, things he hears us saying. repeats repeats repeats.

He is jealous of the new baby but there has always always been something more going on.

He is apparently an angel at the childminders and for my mother in law which just serves to make me feel like a bad mother. HV sent us on the parenting course which also made me feel like she thought I was a bad mother. I am not. I read parenting books obsessively and consistently apply all the things you are supposed to do. Being strict escalates things and I now know that unless I want to ruin the whole day it is better ignore as much as possible rather than cause the rolling on the floor uncontrollable screaming which lasts forever. Friends then tell me I am too soft on him.

Over the last week I have spent most of my day screaming in his face, trying not to scream in his face, trying not to smack him.

We have had a mental health person for his sleep for the past two years but she has just signed us off as normal. I dont feel FUCKING normal. I have been crying since 4am!

What on earth could be wrong. My mental health expert lady went NUTS when I suggested he might have ADHD and said she had seen lots of boys with ADHD and he defo did not have it and that he was capable of playing nicely with toys blah blah blah

WITS END - please help!

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mummytime · 05/11/2010 06:46

Can he do real imaginative play? Can he play with a cardboard roll and pretend it is a Hoover? Can he use a toy hoover as a machine gun etc.?

My other tip is to get yourself a star chart and start recording whenever he is good (however slightly). So you see that he is not being awful all the time.

Next get yourself some sleep whenever he stops. Lack of sleep is a killer.

Is he better if yo ca get yourselves out of te house by 9am? My son was, so we made sure we were out, if only for a mooch around town.

Ignore your friends, do what works for you and your son, and keeps you sane.

How is his language development? Frustration with language can cause lots of problems.

Good luck!

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smugtandemfeeder · 05/11/2010 06:55

thanks mummytime he uses everything he finds as a hoover, trumpet, drill, chainsaw so I guess he can do imaginative play, as long as it involved the hoovering drilling noise!

Its awful if we go out, even if its early in the day. I cant even walk around the side of the house to the garage as he creates merry hell about going back inside the house. Every time.

I have a start chart for potty training but it only interested him for about a week. He has now reverted to doing most wees on the floor, as well as quite a lot of poos. He refuses to wear clothes which I try to ignore as I know its normal but then he crys "i'm cold mummy" "no, no clothes mummy" then "i'm a bit hot mummy" If I manage to fight him into them positively encourage him to get dressed, he always takes them off again within minutes. MIL has a look of horror on her face when she visits. On the other hand he merrily plays in the garden in the freezing cold stark naked without telling me he is cold.

His speach was definitely the slowest out of all my friends kids who were born the same time as him but its apparently normal. He cant speak as well as his friends but he talks quite well and communicates and forms sentances.

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smugtandemfeeder · 05/11/2010 07:17

Example of my morning at the moment. One small box discovered containing a samll cake. "I want to open the box mummy" I helped him open the box. Cake discovered "I want it some cake mummy" Ok have some cake "NO CAKE NO CAKE" ok i'll eat the cake "I want it some cake" cue rolling on the floor screaming.

Moved on to play with toy pram. Screaming with frustration because he couldnt lift toy pram over top of another toy. Helped him do this. Now screaming with anger as he wants to collapse the toy pram and he cant quite work out how to do it. If I try and help him he screams because he wants to do it.

Sits down to look at book, "I want to find the collapsable fink mummy" (character in book) then randomly gets cross with book, despite having found the bloody collapsible fink and screams "I rip the book I rip the book" and try to rip it then throws it.

Closely followed by " I wee on the floor mummy"

This is a five minute slot of my morning. The whole day is like this. I get playdoh out paints, cbeebies, whatever - only entertains him for 2 minutes then ends in screaming anger.

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ArthurPewty · 05/11/2010 07:36

This reply has been deleted

Message withdrawn at poster's request.

telluthetruth · 05/11/2010 07:52

sleep probs sensory issues with clothes hyperactivity confusion etc are indications that your little one has a complex profile which may or may not be asd but needs unravelling before you do under the strain.

we don't have experience of normal either but dont be fobbed off by health visitors who mean well but sometimes underplay through lack of specialist knowledge. you need specialist help in understanding the causes of his behaviour and how to manage it. go to your gp and ask for referral....

keep posting moral support is on hand....

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ArthurPewty · 05/11/2010 07:55

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Message withdrawn at poster's request.

wasuup3000 · 05/11/2010 09:55

Everyone has given really good advice. You sound exhausted, do you get any break from your son at nursery and if so what do they say?

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TheArsenicCupCake · 05/11/2010 11:56

The whole bit with clothes, hot / cold, sleep, never being still etc would make me suggest going to your gp to ask for a referral... That with echoing and the fact that everything has to be a Hoover.

It may jolly well be nothing but I'd list what you have listed here and see if you can have it looked at.

In the mean time.. You could try the softest of softest clothes ( ds lived in fleece jumpers and second hand trousers ( they are well worn in) that are tumble dried.. But absolutley no fabric conditioner ( it's too smelly unless it's lavender) for ages.. Actually still does tbh and he's almost 12).

What we did for jumping about all the time was to have a wobble cushion and a gym ball.. If you have space for a trampoline get one ( indoor one would be fine).. If he'll play row row row your boat with actions that can help.. But basically it's controlled jumping about that your looking for rather than stopping it.

Shops and resturants are places that are full of smells, noises, visual, different lights, smells and lots of people .. So are generally a total nghtmare.. Ds2 still needs phyically guiding around them, will still touch everything to ground himself and would rather not be there... Whatwe do to help is go when it's quieter, always go to the bits where he can touch things first ( he lines to feel sponges, towels shiney things ( that aren't breakable).. And then we move onto the bits we need to goto.. My rule is.. Hands in pockets and walk when it might break.. Other than that stay close.

And sleep.. Well we have a rather long ritual of how to go to bed.. No screentime an hour before bed, story time, Epsom salt bath, scrunch all mucsle up tight and release, tuck up time and a calm audio story on his cd player.
It's not perfect but it does help a bit.. But took a long time to get there with it.

Some of these things may work, some won't as every dc is different..

Also if you can ask nursery to monitor and log any difficult or different behaviours it would help.

But I'm hoping that throwing some ideas at you might give some insipration whilst your trying to get referrals ect.

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lagaanisace · 05/11/2010 12:17

Your son reminds me of mine three years ago (now 5), except that mine couldn't talk at that point and had only just started walking. I spent a lot of time thinking that somehow it was me, my parenting and that I was making heavy weather of what was relatively normal. My son has recently been given a statement at band M, and we are looking at him attending a special school. I don't say this to scare you - your son's development may be very different from mine and become more 'typical'. I say it because I would hate anyone to feel the guilt and unworthiness I felt for ages because I just didn't realise enough that it was his development that was causing difficulties and not somehow me.

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CognitiveDissident · 05/11/2010 14:15

My 3.8 year old DS was very similar at that age, only difference being; he had barely any speech & mainly communicated by pointing and screaming. As his language and communication have improved (he's now at the level of a 3 year old NT) so has his behavior.
I found that sanctions and punishments did no good at all, they just caused things to rapidly escalate, and we ended up with epic meltdowns lasting all day. It was easier to ignore or divert, and if he was diong something dangerous/destructive I'd just remove him from the situation (or the situation from him).

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StarkAndWitchesWillFindYou · 05/11/2010 14:35

Go to the GP and get a referal to a Development Paediatrician.

Look up lots of traits from the NAS website and all the ones that apply, plus any that 'might' apply, list. You need to convince your GP of the referral.

It doesn't matter whether your child has autism or not. Your child has 'something' that is causing him difficulties and you need to know about it so you can adapt your parenting strategies from screaming and smacking or you'll all internally combust!

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donkeyderby · 05/11/2010 14:49

Lots of good advice. Another thought, is everything going ok at the childminders and MIL's? Is he worried about kicking off there and saving it all up for you?

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smugtandemfeeder · 05/11/2010 16:50

Thanks Leonie and telluthetruth I just want someone to tell me that this isnt normal. My DH only works two days a week and I am at home full time so really if this was anywhere close to normal we would be able to cope. I am finding that i'm getting irrationally cross with silly things like the repeating and the noises and all the shouting which I know IS normal but i'm so tired it is really hard. I'm struggling so badly with my temper.

Language: He mostly talks about what he is doing. Pretends to be doing things. Mostly hoovering. He does another one where he pretends he is going to work but he does it over and over again til i'm so bored its not even funny.

When we went on the parenting course he stayed very close to us and was very quiet. He played with the same toy every week - tea pot set - making kettle boiling noise and pouring tea. The second he handed cups of tea to other adults they HVs lept on it excitedly and kept banging on about how wonderful it was. No one mentioned the fact he only played with one toy.

He went to a new childminder today and she said he was confident, well behaved, sociable, no tantrums at all and went straight off at the playgroup they went to. When I arrived to pick him up he immediately went and found a pair of sodding pink shoes to put on belonging to cms daughter. I spent 15 minutes trying to convince him to relinquish the shoes, resorted to bribary with lure of icecream at home. he agreed but still caused merry hell screaming and rippedtwo handfulls of my hair out in front of shocked confused childminder.

I'm really not coping. He has been home for two hours and i'm already at breaking point. Just constant violent tantrums about things he cant do/aid he didnt want to do which he now wants to do.

I now have a referral from the GP to be seen privately. God knows what i've been referred for I was just glad to be referred.

Thank you for the other suggestions. I am obsessed with self help books and books on child rearing so will order book suggested above.

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smugtandemfeeder · 05/11/2010 16:52

StarkAndWitchesWillFindYou thank you! I keep reading symptoms and thinking thats not quite him and thinking the doctors will just laugh at me. Your advice about something not being quite right has made me feel so much better.

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smugtandemfeeder · 05/11/2010 17:23

Cognitivedissident

This is EXACTLY how I feel. "I found that sanctions and punishments did no good at all, they just caused things to rapidly escalate, and we ended up with epic meltdowns lasting all day."

It really cant all be jealousy with the new baby. He has always been very very tricky. I find that when I have the energy it takes every ounce of strength I have to do amazing parenting - distracting, creative play ideas, lots of attention - everyone else I know just sticks beebies on and they sit and watch it all day with the odd tantrum about something silly. My son is not fobbed off with beebies!

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TheLadyEvenstar · 05/11/2010 18:32

smug please please fight for your son!!

my DS1 is 12 now and I listened to doctors for years that it was a phase/normal etc he is now close to getting a dx of aspergers.

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smugtandemfeeder · 05/11/2010 19:09

Thank you Theladyevenstar, I have just done this test online PDD assessment and he has LOTS of these traits.

I have listed them below as I cannot believe how many he has.

Excessive fear of noises such as hoovers (ironic that he also has a hoover obsession)
SOCIAL INTERACTION DIFFICULTIES (with same age peer) [how to rate]

Temper tantrums, overreacting when not getting his/her way BIG TIME

Ignores pain (bumps head accidentally without reacting) Very much so. Only ever cries if he really really hurts himself. A little tough nut.

Doesn't like to be touched or held (body, head) He often pulls away from me when I try to cuddle him.

Hates crowds, difficulties in restaurants and supermarkets The two places we cannot go!!!!

Voice louder than required The noise is immense, always so noisy!

Frequent gibberish or jargon

Pulls parents around when wants something

Repeats heard words, parts of words or TV commercials

Repetitive language (same word or phrase over and over) (eg he will say "I want some milk mummy, I want some milk mummy, I want some milk mummy over and over until I get it)

Self mutilation, inflicting pain or injury (If he gets very very cross he bites his own hand or pulls his own hair)

Toe walking - has been doing this recently.

Interest in toy parts, such as car wheels - If you give him a new spangly toy car which wizzes and flashes and shouts at you he turns it over and tries to work out how to get the batteries out and spends ages taking them out then gets frustrated. Ignores the flashing whizzing etc

Obsessed with objects or topics (trains, weather, numbers, dates Obsessed with hoovers, chainsaws, ride on toys.

Spinning objects, self, or fascination with spinning objects He spins himself, doesnt have any spinning toys.

Restricted interest, (watching the same video over and over) Always asks to watch "chainsaw man" on You Tube. Over and over.

Difficulty stopping repetitive "boring" activity or conversation Hoovering...... Chainsawing....

Attachment to unusual objects, (sticks, stones, strings, or hair) Collects pebbles and other oddments in his trouser pockets.

Stubborn about rituals and routines; resists to change Loves rituals but too busy tantrumming to really get into this. Loves hand washing ritual. Always plays in exactly the same way in the bath.

Savant ability, restricted skill superior to age group (reads early, memorizes books) He remembers exact obscure characters in books he has only read once eg Collapsable fink. Characters and objects on pages that we do not remember.

I remember my DHs mum telling me that she took DH to specialists when he was little as he was just the same as my son. She said the specialist told her that she should give him more attention. Now at aged 30 my DH has possibly self diagnosed some kind of autism and feels like his whole life suddenly makes more sense. I dont want my son to grow up without me knowing why he acts the way he does and with me sticking him on the naughty step all the bloody time shouting at him making him sooooo much worse.

Both DC in bed asleep. And relax.........

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mariagoretti · 05/11/2010 19:39

You are right to think these behaviours are totally not normal. You are right to say this isn't your parenting, it's not postnatal depression, it's not sibling rivalry, he's not 'just a boy'. Whether he gets a formal diagnosis of some sort obviously depends what the developmental paediatrician and other professionals think.

Either way, it's time for you to trust your instincts, stand your ground and demand early intervention, as from your postings it's clear he'll benefit hugely from it.

Like other posters, I doubted my own judgement for far too long and wish I'd insisted on being listened to and my ds helped much earlier. Our saving grace was some relevant background knowledge, which we combined with lots of reading and advice from other SN parents, so 'home therapy' more or less addressed most of what a formal programme would have.

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TheLadyEvenstar · 05/11/2010 20:01

I just did that for DS1 his score was 125.

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smugtandemfeeder · 05/11/2010 20:07

DS1 got 101 which it says is moderate. No idea if the test is any good or not but it seems to list his traits.

Crap. I'm starting to feel a bit scared.

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TheLadyEvenstar · 05/11/2010 20:10

Smug
this is a conversation DS1 is currently having with DS2 but which started with me.

ME: What did you have for lunch
DS1: I had a cheese sandwich, there was only chilli con carne or chicken so I had the cheese sandwich
ME:I thought you liked chicken
DS1: DS2 I had a cheese sandwich for lunch, there was only chilli con carne or chicken so I had the cheese sandwich
DS2:Do you like my house (ds2 is 3yrs old)
DS1: Listen to me now I had a cheese sandwich


and so on it goes.

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daisy5678 · 05/11/2010 20:17

crap Sad my boy still scores 161 on that test, even though I think improvements have been made!


Smug, my son is very very sociable in his own way. Lorna Wing (autism guru) comes up with 3 autism categories for social interaction levels: passive, aloof and 'active but odd'. That's my son: sociable, but randomly so Smile

FWIW, I have a cousin who was very like your son, and he is now 10 and pretty much NT (if a bit stroppy and gifted). Also, my son was very like your son, and he has autism and ADHD.

I do think it's worth getting him referred to check this out.

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ArthurPewty · 05/11/2010 21:38

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smugtandemfeeder · 05/11/2010 21:43

DH has just scored our son much higher, he spotted quite a few things I hadn't, like.having conversations with his toy boat 'come on boat' etc.

DS often repeats himself until I acknowledge what he is saying. My DH does this too. It's no wonder I'm exhausted with two of them in the house talking away about nothing.

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smugtandemfeeder · 05/11/2010 21:49

Leonie I guess I'm just scared that people will look at him differently, think he is weird, think mistakenly that he is stupid, scared that I'm going to have to accept the tantrums, scared I won't be able to go anywhere busy anymore. Scared as I know every family member will screw their face up and say theres nothing wrong with him.

I know however that I need and want to help him. He is a beautiful delightful intelligent boy, I love him so much, I just wish I got to spend more time with the happy version of him.

I look forward to reading endless books though, I really do love that.

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